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Meniere' S Support - Psychology, Special Needs, Health - Posted: 6th Sep, 2012 - 1:36am
Posts: 5 - Views: 786
Post Date: 17th Jan, 2005 - 8:05am / Post ID: #
Meniere's Support
My Wife has menieres and I was wondering if anyone else either has menieres or lives with someone who has menieres. It is very hard for me to relate to my wife, so she wrote this for all her family and me (even though I am very understanding) so that people can better understand what its like to live with the disease. Its rather long, but take the time to read it please, you will better understand what the disease does to you or your spouse.
QUOTE Life... Before you judge me on one of my good days, you need to understand what one of my bad days is like.
Tinnitus - imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for just minutes or hours. You can hardly hear anything but that fire alarm or bee - It drowns almost everything else out.
Vertigo - Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine not being able to walk and falling down, feeling like someone is pushing you down to the floor not wanting you to walk. On good days trying to use the wall or your walker to help you walk from your bedroom to just trying to get to your bathroom. Trying so hard not to fall or it being so bad you have to crawl like a baby just to get there.
During one of these vertigo attacks that can last from several minutes to several hours if not days. Feeling so nauseous it's hard to keep even water Down, I can't walk, and in order to get out of bed to go to the bathroom, I Have to crawl like a baby on my hands and knees. The movement makes me so I'll, then imagine trying to crawl back to bed, that movement makes you feel Like you have just ran a 10 mile race and you are so tired and sweating from Exhaustion. I end up sleeping for days after one of these attacks, only Getting out of bed to go to the bathroom or to get something to drink, if I Think I can keep it down. I have to ask my husband to see what day it is when I am able to sit up with out fear of falling.
You see while playing havoc with your balance and equilibrium also reeks Havoc with your hearing. It wouldn't be so bad if the hearing loss was Constant and predictable. One day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate. Then wondering if you will be deaf one day or if it will always be like this.
Even on a daily basis, your mind is so confused by the signals its getting from your ears that your balance sucks. You run into things because you can't balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don't know whether to laugh or cry when someone makes a joke about all of it, knowing they don't mean to hurt you by any thing they say.
I also have days that my coordination just doesn't seem to be together. I'm carrying something, and all of the sudden I drop it. I sometimes miss a step and fall because I thought the step was closer then it was. Then you begin to read and read about why these things happen and find out THIS, happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I'm not quite sure which), and you can lose coordination.
wait I"m not done yet there is still more. Your vision can start playing tricks on you. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to "Track" movement at the same speed, giving you double vision, and a bad headache.
You can get confused easily and your memory and concentration aren't reliable. It's what some people refer to as "Brain fog". Imagine having this and not knowing this was part of what is wrong with you and everyone just keeps telling you that your memory is so bad. Finally they happen to ask someone else that this too is a symptom of and you actually feel relief that it's not just you.
Now try to imagine living with this never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination disequilibrium or "Brain fog" is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what's causing it and you can make the choice not to do it again. With this there's very little warning if any for these attacks, you don't know what's causing it, and there's no cure - only devices, surgeries, and some medications that can cause you to be so tired you want you sleep all the time and they can also make your vision bad (somewhat help alleviate the symptoms.) And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor, you may laugh but it truly is not something that to be joked about.
Understandably, anxiety and depression comes on during and after an attack. We often ask how much worse this get can. For some strange reason, doctors aren't very willing to give out worst case scenarios.
Now decide if you think I'd be able to do the same things you do on as punctual and regular of a schedule. For me, there's no way. I'm being up front about my limitations. I try the best I can at living up to my full potential. Could if you were in my shoes? finding out from my reading they think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.
Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me "Why can't you bend down - pick it up - lift it - drive - get a job - walk without a walker" It's because I know these things can either bring on an attack - I couldn't do them on a regular schedule because of the symptoms - or if I did do them, I could put myself and others in harms way if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can't decide when I'm going to have a bad day, and the more stress I'm under, the more likely I will have a bad day.
So, please don't judge me unless you've been in my shoes!
Tinnitus - imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for just minutes or hours. You can hardly hear anything but that fire alarm or bee - It drowns almost everything else out.
Vertigo - Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine not being able to walk and falling down, feeling like someone is pushing you down to the floor not wanting you to walk. On good days trying to use the wall or your walker to help you walk from your bedroom to just trying to get to your bathroom. Trying so hard not to fall or it being so bad you have to crawl like a baby just to get there.
During one of these vertigo attacks that can last from several minutes to several hours if not days. Feeling so nauseous it's hard to keep even water Down, I can't walk, and in order to get out of bed to go to the bathroom, I Have to crawl like a baby on my hands and knees. The movement makes me so I'll, then imagine trying to crawl back to bed, that movement makes you feel Like you have just ran a 10 mile race and you are so tired and sweating from Exhaustion. I end up sleeping for days after one of these attacks, only Getting out of bed to go to the bathroom or to get something to drink, if I Think I can keep it down. I have to ask my husband to see what day it is when I am able to sit up with out fear of falling.
You see while playing havoc with your balance and equilibrium also reeks Havoc with your hearing. It wouldn't be so bad if the hearing loss was Constant and predictable. One day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate. Then wondering if you will be deaf one day or if it will always be like this.
Even on a daily basis, your mind is so confused by the signals its getting from your ears that your balance sucks. You run into things because you can't balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don't know whether to laugh or cry when someone makes a joke about all of it, knowing they don't mean to hurt you by any thing they say.
I also have days that my coordination just doesn't seem to be together. I'm carrying something, and all of the sudden I drop it. I sometimes miss a step and fall because I thought the step was closer then it was. Then you begin to read and read about why these things happen and find out THIS, happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I'm not quite sure which), and you can lose coordination.
wait I"m not done yet there is still more. Your vision can start playing tricks on you. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to "Track" movement at the same speed, giving you double vision, and a bad headache.
You can get confused easily and your memory and concentration aren't reliable. It's what some people refer to as "Brain fog". Imagine having this and not knowing this was part of what is wrong with you and everyone just keeps telling you that your memory is so bad. Finally they happen to ask someone else that this too is a symptom of and you actually feel relief that it's not just you.
Now try to imagine living with this never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination disequilibrium or "Brain fog" is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what's causing it and you can make the choice not to do it again. With this there's very little warning if any for these attacks, you don't know what's causing it, and there's no cure - only devices, surgeries, and some medications that can cause you to be so tired you want you sleep all the time and they can also make your vision bad (somewhat help alleviate the symptoms.) And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor, you may laugh but it truly is not something that to be joked about.
Understandably, anxiety and depression comes on during and after an attack. We often ask how much worse this get can. For some strange reason, doctors aren't very willing to give out worst case scenarios.
Now decide if you think I'd be able to do the same things you do on as punctual and regular of a schedule. For me, there's no way. I'm being up front about my limitations. I try the best I can at living up to my full potential. Could if you were in my shoes? finding out from my reading they think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.
Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me "Why can't you bend down - pick it up - lift it - drive - get a job - walk without a walker" It's because I know these things can either bring on an attack - I couldn't do them on a regular schedule because of the symptoms - or if I did do them, I could put myself and others in harms way if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can't decide when I'm going to have a bad day, and the more stress I'm under, the more likely I will have a bad day.
So, please don't judge me unless you've been in my shoes!
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Support Menieres
How terrible! I did a google search on menieres. I read of some treatments that might help, but see there is no cure. This must be awful. I know how bad I feel when I get an ear infection or a sinus infection and feel lightheaded or dizzy!
Has your wife had no success with any of the treatments available?
Post Date: 17th Jan, 2005 - 8:18pm / Post ID: #
Meniere's Support Health & Special Psychology
I am so sorry for your wife, and what a tremendous load this must be for both of you to carry. That sounds just dreadful! I had never heard of menieres before, so you taught me something new today. It really opens my eyes when I hear someone share things like this, so thank you for having the courage to do so. I can only imagine what her days must be like. I hope she has some caring friends in her life, and thank goodness she has you. She is welcome to come here, too, if it would be helpful to her. Thanks again for sharing with all of us.
Dawn
Post Date: 18th Jan, 2005 - 5:49am / Post ID: #
Support Menieres
Thank you so much for your support! She isn't bad all the time, but her attacks come more frequently as of late. Some of the treatments work a little, sometimes they help a lot, sometimes they don't help at all. We have three kids so trying to work with this is frustrating, this forum is my outlet to the world and I am so thankful for everyone in this place, you have given me a place to go where I can discuss anything thats on my mind.
As for my wife coming here, she has a hard time with her vision that gets blurry and when she gets vertigo, its hard to stay sitting at the computer for very long, but she worked hard to write what I posted. Thank you all again!
Post Date: 6th Sep, 2012 - 1:36am / Post ID: #
Support Menieres
Name: Tina
Country: 
Title: Meniere's support
Comments: Your wife didn't write it, she copied it from one of two original sites. How do I know? Because I'm the one who wrote, it to Dr. Alec Salt, so I'd appreciate it if you'd give me credit. Sincerely, Tina McDonald
TOPIC: Meniere's Support